Severe yet functional

maddmatt

Greetings everyone.  My father is 82, was diagnosed with severe Alzheimer's. in July.   He is otherwise in good health, passed his driving evaluation, and still lives alone with my help a couple times a week.  He is a master at hiding it, but if you drill down on things like paying bills, in the moment he really struggles.  I get a lot done behind his back,  but I have the ethical struggle of not being completely honest with him.  I know it is necessary, but any suggestions on making that easier on yourself  as the caregiver would be appreciated!  This quite possibly is going to kill me first!  

On that note all the best to everyone here.  The struggle is real and having a place to vent frustrations I hope proves to be helpful.  

M1

Hi Matt and welcome. There is a concept in these forums you'll run across frequently of therapeutic fibs-to keep the peace, to reassure, to get necessary things accomplished. It helps to get comfortable with it, no need to feel guilty. You are dealing with brain damage that can't be helped and that can't process reality. Just like you wouldn't explain the whole truth to a young child, that's what you're dealing with here. But there is loss involved-loss of the dad you remember. And that always hurts.

I'm surprised he's labeled severe if he passed a driving evaluation. 

Good luck, this is a helpful place.

star26

You know your Dad best, but many people with dementia become highly agitated, anxious, angry etc. when told "the truth". If the person has anosognosia (unawareness of once's deficits: such as the cognitive deficits of dementia), the person will feel they are being lied to, taken advantage of, tricked, etc. In this case, I think it is most kind, loving, and compassionate to NOT say the painful truth. (And with dementia, you'd probably have to repeat the truth over and over, causing the harmful reaction over and over.) It's the INTENTION that matters. You're not lying because you are trying to steal his money. You're lying because you want him to feel happy, safe, and comfortable for the rest of his life. That's something for you to feel good about. 

Welcome to the forum. 

Mint

Matt understand how you feel as I deal with some of these things.  My mom functions fairly well at cooking, keeping house clean etc.  She cannot keep her check book balanced properly (have done that for her quite a few years), medically noncompliant, given a lot of money away, no social skills, aggressive behaviors etc.  I can’t fib to her because she would be able to call me out on it.  Just don’t tell her a lot of things, don’t respond back to things she says etc.  regret that I have to do this, but no choice as any info she has causes some aggressive behavior, often very unreasonable.  Regret that cannot talk with her about normal life but the only choice I have , it’s tough.  Take care

Abuela

Hi Matt.  My mom was like this... very functional.  But extremely compromised by dementia.  She could chat up a storm with anyone and make sense and also hid it very well for a very long time.  For me it was a constant struggle to decide that she needed a different level of care.  But when that time came... it was brutal because I spent all of my energy 'managing' mom.  By that I mean... helping her to trust me and the moves we were making and also fibbing when necessary.  The most heartbreaking moment was driving with her the last day she drove.  All the while I knew that it was her last drive... and she had no idea that her car would never be available to her again.   And she never, ever stopped talking about how she 'lost her car' for the seven years of her illness... Luckily for us, she had given us power of attorney to us years earlier in the case that she was not able to handle her affairs,  so that helped a lot.  If we had to do it after the dementia set in... it would have been much harder.

Wilted Daughter

I liked and agree with the statement regarding "intent". I've been operating in secrecy for years...learning, by trial and error, what to discuss and what to handle behind the scene. You'll learn...if it brings about argument, repetition, exhaustion then "Just Do It". As said, if your intentions are good and no harm is foreseen and it's something they would do (taking care of business) for themselves or you pre-dementia then you should not feel badly. 

However I know from experience it may take some time to come to peace with "fiblets" because most of us were taught if you're not telling the truth you're lying. Think of it another way, would you tell a child the "truth" about going to the dentist (extractions, needles, pain)? Probably not too much information and all they will hold onto is 'pain'.

It will get better as time goes on and you learn what to talk about and what to do for the best outcome in your situation. I struggle with this sometimes daily. LOL 

It's a journey so each day, expect a new beginning!

*Is your dad still driving?

Quilting brings calm

Matt...can you explain the ‘severe dementia’ diagnosis versus the passed the driving evaluation?  Because every explanation of the stages of dementia I’ve seen places ‘severe’ dementia so far down the scale that the patient is not capable of living alone, doing any self care or functioning in the world at large.    My LO is only at the ‘mild/ moderate at stage  4’ diagnosis, and is already in assisted living.  She gave up driving, managing finances, etc a while back.

Cynbar

I think the "fibbing" gets easier with time. It used to bother me greatly, my DH and I were always partners and would never hide things from each other. But I came to see that too much explanation, too much truth was upsetting and agitating him, probably as a reminder that he could no longer process it. That can't have been a pleasant feeling for him. I don't want to increase his anxiety, I want to keep him as calm as possible for a lot of reasons. So, it became clear to me that keeping him out of the loop was the kindest option. Now, I've gotten really good at it, and it seldom bothers me.